Research on aging, dementia and care in later life · free to read and cite

Research · for Dementia charities, carers' organisations & Alzheimer's support groups

Half of All Dementia Care Is Unpaid: The Carers Behind the Figures

Published 2026-10-15

Around the world, much of the care people living with dementia receive is given without pay by family members and friends. The World Health Organization estimates that about half of the US$1.3 trillion global cost of dementia in 2019 came from unpaid care, with carers giving an average of five hours of care and supervision a day, and women providing 70% of care hours[1].

Behind those figures are spouses who become carers in their seventies and eighties, daughters and sons who fit care around work and children, and friends and neighbours who check in every day. The care itself is often unseen: helping someone wash and dress, keeping track of medicines, sorting out letters and benefits, staying close at night. This article sets out what the research and official statistics show about who these carers are, how much care they give, what it is worth when someone puts a price on it, and how little of the support that guidance recommends actually reaches them.

50%of the estimated global cost of dementia in 2019 was unpaid care by family and friends, rising to 85% in low-income countries[2]
39%of carers of someone with dementia known to councils in England in 2023–24 said they cared for 100 or more hours a week[3]
19 billionhours of unpaid dementia care were given in the US in 2025, by nearly 13 million people, according to Alzheimer’s Association estimates[4]

Unpaid carers give about half of all dementia care worldwide, and far more in poorer countries

The most complete global estimate comes from a cost model built for WHO’s Global Dementia Observatory. For 2019, it put the worldwide societal cost of dementia at US$1,313.4 billion for 55.2 million people living with dementia; US$651.4 billion of that, or 50%, was the cost of unpaid (“informal”) care[2]. The share is not the same everywhere. In high-income countries, where paid social care is more developed, unpaid care made up 44% of costs; in low-income countries it was 85%[2]. Most people with dementia — 61%, by the same model — live in low- and middle-income countries, where families carry most of the care[2].

Share of the cost of dementia that is unpaid care, by country income group, 2019Estimated informal (unpaid) care costs as a percentage of the total societal cost of dementia in 2019, by World Bank income group: low-income countries 84.9%; lower-middle-income 75.9%; upper-middle-income 62.8%; high-income 44.3%; all countries 49.6%.0%25%50%75%100%Low-income countries84.9%Lower-middle-income75.9%Upper-middle-income62.8%High-income countries44.3%All countries49.6%
Modelled estimate, 194 countries, 2019; unpaid care valued mainly at average wages, so the share depends on the costing method. Source: Wimo et al., Alzheimer’s & Dementia 2023, Table 3.

The authors found that most unpaid carers are women, about 70% on average, and that the proportion is higher in low- and middle-income countries[2]. An earlier study by the 10/66 Dementia Research Group, which interviewed 706 people with dementia and their carers in 24 centres across India, China and South East Asia, Latin America and the Caribbean and Africa, found most carers were women living in extended family households. Despite that tradition of family care, carer strain was at least as high as in richer countries, and many carers had cut back on work to provide care[5]. That study is now two decades old, and the global modellers note that in most countries there is still little or no information on who family carers are or what they do[2].

Putting a price on unpaid care: national estimates run to tens of billions

Countries with deeper data publish their own estimates, though each uses its own methods and none are directly comparable. In the US, the Alzheimer’s Association estimates that nearly 13 million people gave unpaid care to someone with Alzheimer’s or another dementia, providing more than 19 billion hours of care in 2025, valued at $446.3 billion[4]. It also estimates that families bear 70% of the lifetime cost of care for a person with dementia, through unpaid care and out-of-pocket spending[4].

For the UK, a 2024 model by the consultancy Carnall Farrar, commissioned by Alzheimer’s Society, estimated the total cost of dementia at £42 billion in 2024 for about 982,000 people living with dementia. Unpaid care was the largest single part, at £21 billion, or 50% of the total[6]. The same model projects total costs rising to £90 billion by 2040[6]; that is a projection resting on assumptions about prevalence and prices, not a forecast of what will happen.

WhereEstimateWhat it shows
World, 2019Cost model for WHO (Wimo et al.)Unpaid care US$651.4 billion, 50% of the global cost of dementia[2]
US, 2025Alzheimer’s Association estimateNearly 13 million carers; more than 19 billion hours; valued at $446.3 billion[4]
UK, 2024Carnall Farrar model for Alzheimer’s SocietyUnpaid care £21 billion of a £42 billion total (50%)[6]
Canada, 2015–16Home care assessments (CIHI)Carers of older people with dementia gave 26 hours of care a week on average, against 17 for other older people[7]

These values depend heavily on how an hour of care is counted and priced. In the global model, valuing carers’ time at the minimum wage rather than the average wage cut total costs by 30.6%, and counting care hours more restrictively cut them by 26.5%; a more inclusive count raised them by 32.6%[2]. The figures are best read as the scale of what families provide, not as precise prices. For who pays for formal care, see our study on the cost of dementia care.

Caring for someone with dementia often means caring around the clock

England’s Survey of Adult Carers gives a detailed national picture, with one important limit: it covers only unpaid carers aged 18 and over who are known to their council. In 2023–24, 152 of England’s 153 councils took part; 140,605 of the 295,025 eligible carers were sampled and 42,255 responded[3]. More than a third (36.7%, an estimated 108,220 carers) cared for someone with dementia[3].

Their caring was intense. 39.4% of carers of someone with dementia said they spent 100 or more hours a week caring, compared with 36.2% of all carers in the survey[3]. The people they cared for were mostly very old: 42.2% were aged 75 to 84 and 41.1% were 85 or over. And the carers themselves were often older people: 69.7% described themselves as retired, against 58.3% of all carers[3].

Other countries show the same pattern. In Canada, an analysis of home care assessments from 2015–16 found that carers of older people with dementia gave an average of 26 hours of care a week, against 17 hours for carers of older people without dementia, and were mainly the person’s children (58%) or spouse (32%)[7]. In the US, the Alzheimer’s Association reports that about two-thirds of dementia carers are women, more than a third are daughters, about 30% are aged 65 or older, and 66% live with the person they care for[4].

In England, carers of someone with dementia were more likely than carers in general to say their own lives had narrowed: more felt they were neglecting themselves, did nothing they valued or enjoyed, felt socially isolated or had no control over their daily lives[3]. The differences are a few percentage points, and the groups overlap, but they point the same way.

Carers of people with dementia compared with all carers known to councils, England, 2023-24Percentage of respondents to the Survey of Adult Carers in England 2023-24, carers of someone with dementia versus all carers. Spend 100 or more hours a week caring: 39.4% and 36.2%. Feel they are neglecting themselves: 22.7% and 20.2%. Do nothing they value or enjoy with their time: 21.1% and 17.8%. Have little social contact and feel socially isolated: 20.0% and 18.7%. Have no control over their daily life: 18.2% and 15.1%.Caring for someone with dementiaAll carers0%10%20%30%40%50%Care 100+ hours a week39.4%36.2%Feel they neglectthemselves22.7%20.2%Do nothing they value orenjoy21.1%17.8%Little social contact,isolated20.0%18.7%No control over daily life18.2%15.1%
Survey of carers aged 18+ known to 152 English councils (42,255 responses); carers can report more than one condition for the person they care for, so the groups overlap. Source: NHS England, Survey of Adult Carers in England 2023-24, data table T3a.

The strain shows in carers’ own health, and it rises with the hours

Caring hours and carers’ wellbeing are closely linked. In the Canadian data, 45% of carers of older people with dementia showed signs of distress, against 26% of carers of other older people, and 21% felt unable to continue caring, against 12%[7]. Carers giving more than 20 hours of care a week had nearly three times the odds of distress of those giving 10 hours or less[7]. In the US, 59% of dementia carers report high to very high emotional stress[4].

In England in 2023–24, 82.9% of carers of someone with dementia said their health had been affected by tiredness in the past year, 73.4% by disturbed sleep, 69.6% by a general feeling of stress and 52.5% by feeling depressed[3]. A 2015 meta-analysis of 17 studies covering 10,825 carers of people with Alzheimer’s disease found an average prevalence of 34.0% for depression and 43.6% for anxiety, with female carers having 1.53 times the odds of depression[8]. In South Korea’s 2024 Community Health Survey of 120,029 adults aged 50 and over, living with a family member with dementia was associated with 1.35 times the odds of depressive symptoms; the study measured living together, not caring as such, and cannot show cause[9].

None of this is inevitable. Strain tracks the hours carers give alone and the support they lack, which services can change. We look at carers’ physical and mental health in more depth in our study on the health of dementia carers.

Breaks, training and support reach only a minority of carers

Even among carers already known to councils in England, the support that would give them time off was used by few. In 2023–24, 15.4% of carers of someone with dementia said the person they cared for had used a service giving the carer a break of more than 24 hours in the past year, and 14.7% a break at short notice or in an emergency; 28.3% had used a shorter rest of up to 24 hours, such as a sitting service[3]. Just 5.4% had used training for carers, while 65.6% had used information and advice and 40.7% a carers’ group or someone to talk to in confidence[3]. One in five (19.8%) said they and the person they cared for had received no support or services from social services at all in the past year[3]. The UK cost model likewise found respite care costs low because unpaid dementia carers use little of it, which it read as a significant lack of support[6].

Support used in the past year by carers of people with dementia, England, 2023-24Percentage of carers of someone with dementia responding to the Survey of Adult Carers in England 2023-24 who said they, or the person they care for, had used each type of support in the last 12 months: information and advice 65.6%; carers groups or someone to talk to in confidence 40.7%; a rest from caring for 1 to 24 hours such as a sitting service 28.3%; a break of more than 24 hours 15.4%; a break at short notice or in an emergency 14.7%; training for carers 5.4%.0%25%50%75%100%Information and advice65.6%Carers group or someone totalk to40.7%Rest of 1–24 hours (e.g.sitting service)28.3%Break of more than 24hours15.4%Break at short notice orin an emergency14.7%Training for carers5.4%
Carers known to English councils, so may be better connected to services than carers overall. Breaks are services used by the person cared for to give the carer a break. Source: NHS England, Survey of Adult Carers in England 2023-24, data table T3a (questions 5a–5c, 6a–6c).

Globally the gaps are wider. Of the 62 countries reporting to WHO’s Global Dementia Observatory by 2021, 36% had clinical guidelines covering treatment and support for carers, and carer support services in rural areas were up to 80% more accessible in high-income than in low- and middle-income countries[10]. WHO’s global action plan set a target that 75% of countries provide training and support to dementia carers by 2025[10]. Across the European Union, a 2026 review of support for carers of older people with long-term care needs (not dementia specifically) found that cash-for-care payments and respite care are the most common forms of carer support, but training, counselling and flexible work guarantees are less developed, and countries in Eastern and Southern Europe tend to offer less comprehensive support[11]. Support for the person with dementia after diagnosis matters to carers too; see our study on post-diagnostic support.

What the evidence asks of us

  • Treat carer support as part of dementia care, from diagnosis. NICE guidance for England asks services to offer carers psychoeducation and skills training, available from diagnosis and as needed after, and to advise carers of their right to a carer’s assessment, including for respite care[12]. In England in 2023–24, only 5.4% of carers of someone with dementia known to councils had used carer training[3].
  • Fund what has been shown to work. In a UK randomised trial of 260 family carers, START, an eight-session coping programme delivered by supervised psychology graduates, improved carers’ combined anxiety and depression score, and the effect lasted six years without increasing costs[13]. A 2026 UK trial of 496 carers found an online self-help programme guided by non-expert therapists reduced anxiety at 12 weeks[14]. Its authors see strong potential for scaling it up[14].
  • Make breaks real. With around two in five carers of someone with dementia in the English survey caring 100 or more hours a week, and fewer than one in six using a break of more than a day[3], respite needs planning and funding as a core service.
  • Close the global gap. WHO set a target that three in four countries provide training and support to dementia carers by 2025; in 2021 only 36% of reporting countries had guidelines covering carer support[10]. WHO’s iSupport self-help programme for carers was created for exactly this[1].
  • Count carers properly. In most countries there is little or no information on who family carers are or what they do[2]. National surveys that identify dementia carers, their hours and the support they receive would let services plan for them.

The care families give is an act of love and loyalty. It should not have to be given alone.

Language: this piece uses person-first language ("people living with dementia", "people with dementia"), as most dementia organisations and people with lived experience prefer, and uses clinical terms such as "Alzheimer's disease" or "mild cognitive impairment" only where a study, dataset or diagnosis refers to that specific condition.

Why we're publishing this

We compiled this evidence because unpaid carers of people living with dementia, and the organisations that support them, deserve the research in one place, cleanly sourced and ready to put in front of a commissioner, a minister or a journalist. The case belongs to carers and the people they care for; our part is to say plainly what the data show. This article is part of our Dementia & Health research library.

How to read this data

The figures here come from very different kinds of evidence. The global and UK costs of unpaid care are modelled estimates: they multiply assumed hours of care by an assumed hourly value, and change markedly with those assumptions. The US figures are the Alzheimer’s Association’s own estimates. England’s Survey of Adult Carers is an official survey, but it covers only carers known to councils, who may be better connected to services than carers overall, and carers can tick more than one condition for the person they care for. The Canadian figures come from assessments of older people receiving home care in 2015–16. The health studies are a meta-analysis of mostly clinical samples and a cross-sectional Korean survey, which show associations, not causes. Figures from different countries use different definitions and years and are not directly comparable. Good data on carers are scarce outside North America, Europe and parts of Asia; we could not include Australian survey figures because the official pages could not be accessed for verification.

Use this data

Free to cite with attribution to Understanding Aging. Charities, carers' groups, campaigners and journalists are welcome to reuse these figures and charts. For the underlying figures as a spreadsheet, get in touch.

Suggested citation: Understanding Aging (2026). Half of All Dementia Care Is Unpaid: The Carers Behind the Figures. https://understandingaging.org/research/dementia-unpaid-carers

Important: This article summarises published research and statistics for general information. It is not medical, care or financial advice and cannot be used to diagnose, treat or predict anything about an individual. If you have concerns about your own or someone else's memory or health, please speak to a GP or another qualified health professional.

Sources

  1. World Health Organization. Dementia (fact sheet). WHO, 2026. who.int/news-room/fact-sheets/detail/dementia
  2. Wimo A, Seeher K, Cataldi R, et al. The worldwide costs of dementia in 2019. Alzheimer’s & Dementia, 2023. europepmc.org/article/MED/36617519
  3. NHS England. Personal Social Services Survey of Adult Carers in England, 2023–24 (report and data tables). NHS England, 2024. digital.nhs.uk/…/personal-social-services-survey-of-adult-carers/england-2023-24
  4. Alzheimer’s Association. Alzheimer’s Disease Facts and Figures (2026 edition, summary). Alzheimer’s Association, 2026. alz.org/alzheimers-dementia/facts-figures
  5. Prince M; 10/66 Dementia Research Group. Care arrangements for people with dementia in developing countries. International Journal of Geriatric Psychiatry, 2004. europepmc.org/article/MED/14758582
  6. Carnall Farrar (for Alzheimer’s Society). The economic impact of dementia. Module 1: The annual cost of dementia. Carnall Farrar, 2024. carnallfarrar.com/…/The-economic-impact-of-dementia-CF.pdf
  7. Canadian Institute for Health Information. Unpaid caregiver challenges and supports (Dementia in Canada). CIHI, 2018. cihi.ca/en/dementia-in-canada/unpaid-caregiver-challenges-and-supports
  8. Sallim AB, Sayampanathan AA, Cuttilan A, Ho R. Prevalence of mental health disorders among caregivers of patients with Alzheimer disease. Journal of the American Medical Directors Association, 2015. europepmc.org/article/MED/26593303
  9. Kim SM, Park JS, Kim DH, Rajaguru V, Kim TH. Association between living with a family member with dementia and depressive symptoms: a nationwide study in Korea. International Journal of Geriatric Psychiatry, 2026. europepmc.org/article/MED/42484148
  10. World Health Organization. Global status report on the public health response to dementia: infographic. WHO, 2021. cdn.who.int/…/who_dementia-infographic_2021-09-23_dv.pdf
  11. Bei E, Albertini M, Toth F. Policies for supporting caregivers of older adults with long-term care needs in EU countries: a systematic review. European Journal of Ageing, 2026. europepmc.org/article/MED/41642382
  12. National Institute for Health and Care Excellence. Dementia: assessment, management and support for people living with dementia and their carers (NG97), Recommendations. NICE, 2018. nice.org.uk/guidance/ng97/chapter/Recommendations
  13. Livingston G, Manela M, O’Keeffe A, et al. Clinical effectiveness of the START (STrAtegies for RelaTives) psychological intervention for family carers and the effects on the cost of care for people with dementia: 6-year follow-up of a randomised controlled trial. British Journal of Psychiatry, 2020. europepmc.org/article/MED/31298169
  14. Kishita N, Gould RL, Khondoker M, et al. Clinical effectiveness of internet-delivered self-help Acceptance and Commitment Therapy for family carers of people with dementia (iACT4CARERS): a multicentre, parallel, randomised controlled trial. The Lancet Regional Health – Europe, 2026. europepmc.org/article/MED/42577221
Dementia & Health · research library

More from this library

See all Dementia & Health research